25 replies to this topic

[Hokieman]

Thanks Dan. Went back to the gym after work today and cut down the workout routine slightly. Feeling good tonight and hope that continues tomorrow. Although diagnosed almost 10 months ago, I have not shared this with my colleagues at work. My wife thinks this adds to the stress. The good news is that after being feeling down and tired the last ten days, I think I'm back to feeling almost normal again. Appreciate the advice and encouragement.

[Tedsey]

I don't think not sharing with your colleagues at work adds to the stress.  In my opinion, it may create more.  What I would give to have asked my loved ones to keep quiet about this (they told maids, neighbors, I had all kinds of strangers coming up to me and asking me how I was "feeeeeling"--for crying out loud, I never ever felt sick until I was adjusting to TKIs).  People will treat you differently and act differently around you.  I even lost a friend who avoids me now in social situations.  Perahps I am a minority, but since there is a very good chance we could outlive this disease, I don't see that we should tell anyone who is not close to us.  Do diabetics or anyone with a chronic disease (and there a lots of them) tell everyone they meet?  There is discrimination to consider.  It happens.  We don't live in a perfect world.  People see cancer=death and not much else.  Companies see it as costly to have such an employee.  That is just the way it is.  If you want your life to go back to any semblance of normal, I wouldn't be so quick to tell anyone who cannot keep a secret.  But maybe this just comes from my bad experience.  I am much happier not mentioning it to people.  I don't feel it is a deep dark secret and if God forbid, things go south and it has to be known, then so be it.  I felt much more stress when people treated me differently.  But now, my life is more "normal" the more I seem normal to others.

Just my two cents.  Do what you feel is right for you.

Take care and be well,

Tedsey

[Hokieman]

Trey,

I've been reading all the amazing information you've posted. Thank you for being such a great resource. Although, I am feeling much better than I was a few weeks ago, I wonder if if I should be concerned about my log reduction. I know you responded before but if you were me, what should I look for in terms of log reduction at my appointment in early November (my one year anniversary of joining this group)????

BCR ABL at dx - 16.45% November 2012

BCR Abl .8328% February 2013

BCR ABL .3558% May 2013

BCR ABL .5519% August 203

I'm just concerned I have not even had a 2 log reduction after 9 months. Would you ask for a mutation test at my November appointment if my numbers still look like they plateaued?

Sorry to be paranoid about this. Just trying to get use to living with this disease and setting realistic expectations and milestones. Thanks for bearing with me with these questions and concerns. I do feel lucky.

[Trey]

Ask your Onc if these PCR results are International Standard.  If yes, then a standardized 2 log reduction is 1%, so you are below that.  It seems there is a shift away from personal PCR log reductions to standardized log reductions.  So although your personal log reduction is less than 2 log you may want to focus on the standardized log reduction.  The rationale is that some start lower than others so it is harder to achieve log reductions from that lower starting point, so personal PCR starting point may not be as relevant as standardized PCR values when International Standard PCR reporting is used. 

Overall I would hope to see a downward break in the plateau in the next couple PCRs.  Even if it stays in the plateau for this next PCR it is not a reason for concern.  However, a person can always take more dosage or change drugs if they are personally not satisfied with progress.  If you want to confirm CCyR (roughly 2 log reduction) you can also have a FISH done.  If negative that would confirm CCyR and -2 log.

[Hokieman]

You can see from my earlier response to this thread in September that I was concerned about a slight increase in my BCR ABL.

GREAT NEWS. My oncologist called yesterday and said I was now MMR with a .05 on my latest test. I was dx last November.

I'm feeling so much better physically and psychologically. Thank everyone for their support.

[mariebow]

Good for you